It can be a blessing, and a curse. It can be an opportunity to grow, learn,
and live life the way youíve always wanted, and it can erase all hopes of the
future the way you had seen it in a split second. It can test your inner
strength, and your physical endurance. It can make you cry, shout, smile, and
laugh. ALS will affect you and those that you love. How it affects you is up to
you. Back to What Is ALS?

Curtisí case was genetic, and thus since 1865,
it had taken the lives of many of his ancestors. Before his diagnosis,
Curtis was not aware that the gene for ALS ran in his family, but even once he
learned this fact, he still did not believe he was cursed. On a daily basis,
though, Curtis and Heidi both experienced moments when they wanted to strangle
this disease called ALS. ALS ate Curtís body. And Heidi watched. But, they
consciously decided that the disease would not destroy them. Curtís case was
extremely rapid, and thus time was very limited. Curt lost physical abilities in
a matter of hours (of course, the muscles had been atrophying all along, but the
shock of not being able to do what he wanted hit him hard). One night he could
stand, the next morning he could not. One morning he could still move his
fingers enough to control his electric scooter, by that evening he could not.
With the help of their community, family, and friends, they kept an optimistic
attitude. With a projected life expectancy of a year since the time of
diagnosis, Curt and Heidi lived every moment they had. They traveled when an
opportunity arose. They
bought a puppy. They sat in their garden for hours, just watching, listening,
living.
They made love whenever they were alone. They took walks, picking up bottles,
cans and debris alongside the roads. They were married twenty-two days before
Curtís death. Yes, they were forced to change their plans for the future, but they still dreamed. Inevitably,
they still argued, got upset over little things, but then they would look at one
another and realize, as is true for anyone, this could be their last day, their
last moment together. Curtis learned to cry. Heidi learned to take better care
of her physical being, for so much of her energy had to be given to Curt. Curt
learned to notice the little things, and that little things matter. Heidi
learned to not dwell on things that you canít control. And they laughed. They
laughed when Curtís reclining wheelchair tipped because Heidi forgot to put
down the wheelie bars (once it was evident that he was OK). They laughed when
their puppy, Woo Woo, realized that his fatherís bum was bare when he hung
suspended in the air in his Hoyerô lift. They laughed when Heidi forgot to pump
the air out of the tube which contained his food, and thus Curtisí belly was
full of gas, as well as nutrients. ALS brought Heidi and Curtis closer, but it
also affected everyone they touched. Many friends, old and new, were drawn
to them, some old friends never called or visited. Some people offered their
help consistently, others popped in and out randomly. Through it all, Heidi and Curt learned
to take control of their lives, despite the fact that they had no control over
the disease. And, in the end, everyone mourned the loss of a wonderful man, an
united couple, and a community that had grown, learned, laughed, and wept
together. Back to What Is ALS?